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Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Sat Jan 10, 2009 10:11 pm

Hi everyone!

Great to read so many positive things on here lately. Gill, Karen & Chinup - all your latest reports were encouraging! Glad things going ok for you all.

My husband is doing well, too. Just about half way through his chemo now and still only getting nausea, some tingling in his fingers and other bits & pieces, which he can cope with. His biggest problem has been going to have blood taken each week,to be tested for the warfarin he needs to take, as well as for his chemo. He has had so many blood tests done over the last 5 months that his veins are now very weak. The nurses take about 3 attempts to get the blood and he is in some pain with it. So, it's been decided he would be better to have a Hickman line put in his chest so they can administer the chemo through that. He should have had it done yesterday. We turned up at the hospital at 7.30am, but there was a mix-up and after he'd got undressed, taken a cocktail of tablets, had blood tests etc, they realised his blood was too thin to operate and he had to come home. He's booked in again next week, once he's stayed off the warfarin for a while.

Just wondered if anyone else had had a Hickman (or central) line put in for chemo? I believe you can get infections in it, but the hospital think that if it's flushed out every week before his chemo, that it should be ok. I hope hubby is doing the right thing, having it done. I know he hates having blood tests now, so it does make sense for that reason. Just don't know how he will feel about having the tubes hanging out on his chest....

Best wishes to everyone

Love
Ellie
xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Sat Jan 17, 2009 5:14 am

Hi All

Just an update on the Hickman line. Hubby was in hospital for the day, but all went well. I must admit I felt squeamish when I saw what he had. Seeing the after effects of the whipple didn't bother me, but I would hate to have this done. It must be worse for a woman, I think.

I think it probably looks worse than it really is though! He isn't too bothered by it and it made it easier to have his chemo this week, so that will be worth it. We joke about him taking his shirt off on a beach - it would scare everyone, I think! That's when I realise just how much he's gone through - whipple, bowel op, so 3 big scars from that and now this line in his chest. Poor man. I didn't realise that chemo damages your veins so much. Maybe because he's had so many blood tests from his many trips to hospital, plus the chemo, that they're getting messed up.

We still have so much to be grateful for though. Having a few days away with our daughter in Cornwall at the end of next week, so that will be a boost for us both. Just have to avoid those beaches! :-))

Thinking of everyone and hoping you are all coping. Please keep in touch and update everyone on progress. I think we all get some strength and companionship from everyone's reports.

Love
Ellie
xx

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Wed Feb 25, 2009 11:14 pm

Hi all,

I have been away from this site for a while and thought I'd post an update on my Dad's progress. You may recall that my Dad had the whipples op in November 2008 and the tumour was successfully removed (or so we hope). My Dad has just had his 75th birthday and is doing exceptionally well. His appetite is good although he is taking enzymes with each meal. His Chemotherapy started in December 2008 and will continue until June 2009. My Dad has no symptons to report. He is not losing his hair nor is he nauseous. I have noticed that he tends to be a little absent minded, losing his train of thought etc, but hey, who wouldn't be like that after what he's going through. All in all, so far so good. Ellie, Joyce, Chinup, it's good to keep up to date with your experiences. Take care, Gill

kay1961
Posts: 7
Joined: Thu Jan 15, 2009 8:41 pm

Re: CHEMOTHERAPY

Postby kay1961 » Sun Apr 05, 2009 11:04 pm

Sory I haven't been writing lately, but I have been looking at the site, and find it very comforting to hear from people in the same boat! My husband John has recovered enough from his operation (whipples that they couldn't complete due to finding growths on his liver & lypth nodes during the op) and he had his first course of chemo last Tuesday (Cisplatin given by infusion) and then Etoposide given in tablet form for the next two days at home.

He has been very poorly since Wednesday morning, had great difficulty keeping the chemo drugs down, had to take 3 in the morning and 4 in the evening for 2 days. He was given anti sickness drugs to help with the nausea. They did not work very well, and he has been sick, or felt sick all the time since Wed am. He has also had diaohrea (sorry about spelling) since Friday. He had not eaten anything since Wednesday, and was only drinking sips of water, because he was so sick. He also had severe restlessness, and found this very upsetting. This stopped on Saturday thank goodness.

He has had some still lucozade today, and tonight asked for a small ham sandwich. Which he has been able to keep down so far.
So maybe he will start to feel a bit better from now on, Until the next time which is on 22/4/09.

Has anyone else had these side effects, and does anyone know if they will be the same next time he has chemo! Any help or advice would be most welcome, I feel so useless, that I can't help him with this situation, other than just being here!

Hello to everyone, and hope your loved ones are coping ok with this awful disease.

Love

Kay xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Wed Apr 08, 2009 7:24 pm

Hi everyone

Just had the worst birthday ever. My husband was called into see the specialist today, to be told that cancer has now been found in his liver. We were both devasted. He had ONE more chemo session to go (tomorrow) and we hoped that would be it, but now that's been cancelled and they are talking about starting him on Gemcitabine in about 3 weeks time.

The oncologist seemed to be saying that it is worth trying the new chemo, but if it doesn't have any effect, then that's it. I can't believe it. To get this far and think he'd got a good chance and now this. Part of me wants to collapse in a heap but the other part is having to stay strong, keep hopeful and positive and pray that because the cancer is only small, the chemo will work.

I'm going to read up as much as I can on other people's experiences and treatment, to see what CAN be done. He seems pretty well in himself, apart from headaches & backache, which may be the chemo he's been on so far. We need to see if those symptoms disappear once it's out of his system. Otherwise, they could be related to something else which is going on.

The fight has just got that much harder.....

Ellie
x

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: CHEMOTHERAPY

Postby chinup » Wed Apr 08, 2009 9:53 pm

Dear Ellie

So sorry to hear that you have been given that news on your birthday, I can imagine you don't know which way to turn at the moment.

Please wait and see what they suggest next and consider carefully the options you are given. But please, if I can give you one piece of advice, don't let the cancer be the only thing going on in your lives. I know that sounds like a pretty harsh thing to say but as long as your husband feels reasonably fit and well apart from pain (which can and should be controlled) then remember that he may have cancer, but it doesn't have him. Get out together and do some nice things - it is a good idea to take a break from thinking about it, even if it is only for a few hours. It's amazing what a break can do. It's very encouraging that your husband still feels himself and I am sure that the medics will take all that into consideration, even though you may not realise it. There are lots of treatments for secondaries in the liver.

Go and try to make the best of the rest of your birthday and face whatever comes next when you know what the options are, keep brave and strong and together!

all the very best to you both, xxx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Thu Apr 09, 2009 1:17 pm

Oh Ellie, so very sorry to hear your news. Ted, my husband, is on gemcitabine and he's doing very well on it, very few side effects other than a slight stomach problem, which was sorted out by giving him a gastro-resistant drug, which I hope will at least give you a little optimism. Ted's CA19-9 (tumour markers) have come down from 879 to 86 over 2 months treatment - I know it's only an indication, but at least it's a positive one! I hope your husband will get an equally good result from the gemcitabine.

Good advice from Chinup too: Ted had been feeling very vulnerable but agreed to go into our local town this week and we just had a few hours looking in the shops etc - it did him the world of good. So, whatever you enjoy doing together, spend some time doing it.

There are always options, although you might have to press the doctors to find out about them. Once you've recovered from the shock, see whether you can meet with the nurse-specialist or liaison to go through the detail. Your local McMillan Centre will also have information which you might find useful.

Our thoughts and prayers are with you.

Nicki

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Thu Apr 09, 2009 8:55 pm

Thanks, Chinup & Nikki.

Your replies have helped me a little. I was very down yesterday, but today I think we are both coping a lot better. I am NOT giving in to this thing, but I really did think, from what all the docs had said, that he was going to be one of the lucky ones. His tumour was supposed to be one that could be dealt with more successfully. It was caught early. He was doing SO well! One last chemo to go!

I have read of people in the USA being treated by a combination of 3 chemo drugs together (haven't got the names in front of me now) and that seems to be successful in getting rid of liver tumours, but our oncologist has only suggested the one. She seemed to be saying that even if he has the new chemo, that it will only perhaps give him a few more months than if he didn't have it! I don't understand it. He's not ill and weak and has put well over 2 stone back on since he lost it after his whipple! Are the docs just giving me the worst case situation? I want to think that this new chemo will help in a big way. Maybe I'm just being over-optimistic.

Anyway, we are carrying on as normal now - one day at a time again. We are going away in our caravan for Easter, with our best friends, so there may be a few tears, but there sure will be a lot of fun and laughs too. I'm convincing myself that mind over matter DOES work!

I will come back after our break and read up on everything, think about what I want to ask the docs, see what they can offer us. In the meantime, thanks again for your support. It's what I need right now.

Hope everyone has as good an Easter as possible.

Love
Ellie
xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Thu Apr 09, 2009 9:25 pm

Hi again

The chemo combination I've read about people having in the USA is Taxotere, Xeloda & Gemzar. It seems to have worked really well for some people over there.

Has anyone here been given this treatment, or heard of it being used?

Ellie
x

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Fri Apr 10, 2009 2:11 pm

Hi Ellie

Gemzar is another name for Gemcitabine, so that is one of the tripple combo. I asked Ted's consultant about adding in other drugs and he felt that the advantages were statistically insignificant and that the toxic combination would be too much for Ted to cope with. However, everyone's different and each consultant has their own opinion, so I think it's worth asking about this combo when you next see the nurse specialist or consultant.

Some doctors do give the 'worst case scenario' - when we were first told Ted was only given months to live but the consultant has revised that to 'at least 18 months to 2 years', even if the chemo didn't have any effect. I think it's something that you probably need to clarify. It's so hard to talk about it, particularly with your husband sitting beside you, isn't it? I sat down with Ted before our last appointment and told him that I was going to ask some very difficult questions but that I didn't believe he couldn't get better - I just had to know the answers so I couldn't walk on eggshells. He completely understood and I was able to pin down the consultant.

There's no such thing as being "too optimistic"! Everyone I've spoken to says that a positive mental attitude is essential if you intend to beat this horrid disease. I hope you have great fun over the Easter weekend and that the break gives you some time to get things clear in your mind.

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Tue Apr 14, 2009 6:10 pm

Hi Nikki

Thank you SO much for your very positive message! So many things you said in it cheered me up. That must have given you a real boost when they changed Ted's prognosis by such a big margin! I did ask the specialist to give me some idea of time - my husband had left the room and I asked her to tell me, but she said she couldn't. All she would say is that with chemo, he may have a few months extra. Extra to what? The effects of the chemo may outweigh any time benefit of having it, so we have to see how it affects my hubby and if he feels it is not working, then he will stop it. He has another appointment on the 29th of this month, so I will see what else they can tell me then.

We had a lovely Easter break, thanks. We met up with our best friends, had lots of laughs, a few drinks, some lovely weather and yes, a few tears too, but I am determined to keep positive and fight it all the way. You & Ted are going to be my inspiration now and I hope we can get the same sort of hope from the consultants that you have had.

Thanks again for your message. Hope you enjoyed your Easter and hope we can keep in touch and support each other in the future.

Best wishes
Ellie
xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Tue Apr 14, 2009 7:33 pm

Hi Ellie

Glad I helped in some small way.

Yes, it was a good boost when they amended the prognosis. I did have to press for an idea of time when we saw the consultant. Sometimes I think they forget that they are literally affecting peoples' lives. Admittedly, I'm the kind of person who would say something to the effect of "Well we need to know and I'm not leaving until we do". I think when the issues are so serious you have to become less afraid of doing things like that - I can live with upsetting a consultant if it means we have some peace of mind!

There is always going to be a quantity/quality issue. I hope your husband has as few side effects as Ted. The decision isn't an easy one for anybody and I hope that neither you nor your husband have to make it. (I hope that last bit makes sense!)

Glad you had a good Easter and we did too. I'd love to keep in touch - would you prefer to stick to this site or email (I don't have a problem with giving out my email address on the board - I get so much spam anyway, it's not going to make a lot of difference - so don't worry that you have to.

Kind regards

Nicki

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Tue Apr 14, 2009 7:46 pm

Hi Nicki (sorry, I was spelling your name wrong in previous posts)

I was going to ask you if you'd like to keep in touch by email, too! Yes, that would great. I think we have to ask the administrator for email addresses. I think if you post yours on here, it will be deleted. I will see what I can find out after I've written this.

Look forward to hearing from you.

Best wishes
Ellie

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Sat Apr 18, 2009 9:17 pm

Kay - Just wondering how your husband is this week? You said he had been having a lot of side effects with his treatment. Is he any better now? Has he been able to eat more?

Just wanted you to know that I am thinking about you and hoping things have settled down. I expect you are not looking forward to his next cycle of treatment on the 22nd. Hope it won't be too upsetting for you both.

Love
Ellie
xx

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Sun Apr 19, 2009 10:45 pm

Hi, just to add to the previous messages, my Dad has been on Gemcitabine since post Whipples (December 2008) and will remain on it until June 2009. He has had no adverse side effects at all, no loss of hair, no nausea or any other disorder. Aside from his chemotherapy, he has developed a lump on his side. Turns out it is a heria protruding from his Whipples scar so he is scheduled to see the surgeon in early May for more surgery. Kindest Regards, Gill